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May 6 14 tweets 4 min read Twitter logo Read on Twitter
[TW: story about severe ME/CFS]

Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)
#MECFS was about as severe as I could imagine being possible. The visit started with a friendly coffee and chat with this person’s caregivers. There were so many emotions and feelings in that conversation: grief, resignation, gratitude, fear and concern for the future and (2/)
exhaustion to name just a few. After some time, one of the caregivers went to see if my host was still comfortable meeting with me. I was told I could enter their room. The room was small, very dark (because light was such a trigger) and well-organized so that this person (3/)
could access things in their immediate environment that were necessary for hygiene, dignity and sustenance with minimal exertion. This individual was no longer able to verbally communicate but could manage a measure of basic communication with small hand gestures to interact (4/)
with me. We had precious little time together because their energy was so limited. I thanked them for taking the time to meet me, I told them that I was working to understand their illness and I asked what I could do to help. The response, though expected, gutted me: nothing (5/)
This visit wasn’t about me helping, it was about me bearing witness and understanding the worst possible severity of #MECFS. In almost 20 years of clinical practice, practice that has not been short of highly confronting clinical situations, I can honestly say that was the (6/)
most prolonged and intense instance of human suffering that I had personally witnessed, and it was the most helpless I have ever felt as a clinician. My time was up. I thanked my host profusely and left their room. As their caregiver shut the door they said “they haven’t (7/)
moved from that spot in 7 years”. As I walked away from the room, these kind people offered me food, drink and asked if I wanted to stay. I wish I could have accepted but my mind was spinning, my emotions were in complete turmoil and I numbly told them that I had to leave. (8/)
I really hesitated to share this experience, but ultimately I decided to share for a few reasons:
1) We so rarely hear about the day-to-day reality of those who live on the extremely severe end of the #MECFS spectrum, it is crucial that we understand what so many are going (9/)
through behind closed doors.
2) I wanted to share how overwhelmed I was by the dignity, grace and selflessness on display by this individual in the face of unimaginable suffering. They gave me some of their precious energy so that I could meet them. They knew I would not (10/)
have any capability to help them, they knew that spending time with me would cost them. They chose to do it anyway so I could learn. That level of selflessness and bravery for a cause is so rare and needs to be acknowledged.
3) If there are people with #MECFS reading this (11/)
who are in a similar situation, I wanted you to know what I’ve seen. I’ve seen first-hand how severe this illness can get. This is an experience that will stay with me for life, and until we have treatment options for people living with this severity of #MECFS, our work (12/)
is not done.
I apologize for such a heavy topic on a Saturday and I hope this thread was not too confronting for #pwME or other complex chronic illnesses who read along. I’ll leave it here, but I’d just like to share a heartfelt thanks to all who are selflessly sharing (13/)
their experiences with me and my team. We are learning so much from this extraordinary community and we are endlessly appreciative of the kindness, selflessness and partnership that you continue to entrust us with. Thank you. 🙏🏻 (End)

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More from @PutrinoLab

May 3
Thank you everyone for the interest in this thread. Many have asked for references, here they are (in order of appearance in the thread):
Davis: nature.com/articles/s4157…

Zollner: sciencedirect.com/sdfe/reader/pi…

Giannos: ncbi.nlm.nih.gov/pmc/articles/P…

Turner: cell.com/action/showPdf…
Also, to the FND folks who have been haunting my comments and mentions (I will not respond directly because I refuse to platform you), please just stop. If I were to state that diabetes is a different illness to cancer, I'm not attacking the legitimacy of cancer. Nor am I (3/)
Read 5 tweets
May 1
We are in our fourth year of work to understand #LongCovid and we now know things about it thanks to science. After being told again by a quasi-well meaning, if uninformed, clinician that LC is just functional neurological disorder (FND). Here’s a 🧵 on why LC IS NOT FND (1/)
So, what *is* FND anyway? Anyone who works in FND has to admit that over the years it has always been a problematic diagnosis with far too many unskilled and uninformed clinicians considering it to be synonymous with conversion disorder (read: “psychosomatic illness”) (2/)
More recently, those who know the field will acknowledge that a more nuanced point of view has emerged in regards to FND. Namely, skilled clinicians who are trying to treat FND in good faith hold the view that in the patient with FND, *some* change has occurred in the brain, (3/)
Read 22 tweets
Mar 16
As I reflect today on #InternationalLongCovidAwarenessDay I know that there is a lot of suffering, loss and grief to account for, but I wanted to offer a message of hope. Today, we:
1) Categorically know more about #LongCovid than we did last year
2) Have educated thousands of 1/
clinicians on basic care and management strategies
3) Have some good-quality drug trials in the mix (thanks @hmkyale and @VirusesImmunity among many others)
4) Have #MECFS and #vaccineinjury cohorts being added to clinical trials (finally!)
5) Microclot research is being taken 2/
seriously by all serious scientists (and major journals: thanks @doctorasadkhan, @dbkell, @resiapretorius and all #teamclots fam)
6) viral persistence research is being taken seriously by all serious scientists (thanks @microbeminded2, @MBVanElzakker and many others)
Read 5 tweets
Feb 2
Exercise and #LongCovid. Again. Always discouraging to see GET receiving funding after the damaging work that has been done in #MECFS and the monumental work done by patients to reverse guidelines that were framed around incompetent, even fraudulent science, but let’s have (1/)
this discussion again:
✅ YES: Many people with #LongCovid experience dysautonomia
✅ YES: Many people with dysautonomia can experience benefit from autonomic rehabilitation so long as it is conducted in a way that respects PEM/PESE
✅ YES: In advanced stages of autonomic (2/)
rehab (that a large proportion of patients with #LongCovid and dysautonomia never reach, btw) rehab can include symptom-titrated physical activity
❌ NO: Symptom-titrated physical activity is the not same as GET, because GET protocols START with aerobic activity which 3/
Read 11 tweets
Jan 2
New year, new (but also quite old) conversations. With few new/transformative treatment options for #LongCovid, #MECFS and other complex chronic illnesses yet to emerge, I wanted to take some time to discuss what it is to be a partner to someone with complex chronic illness. 1/
Partners: I know you did not sign up for this. No one signs up for this. Yet, in the same breath, everyone who enters into a committed relationship with another person(s) signs up for this. I know that not everyone in a committed relationship is (or can be) married, but let’s 2/
talk about marriage. Historically, marriage has not always had the best reputation (i.e. let’s not pretend that it was always about love lol), but in the most basic sense it has been about binding two people together and having them make a formal and public commitment to one 3/
Read 16 tweets
Dec 22, 2022
Many changes are always needed, of course, but I'm seeing a specific need to shift an aspect of how mainstream media reports on #LongCOVID, #MECFS and other complex chronic illnesses. Recently there has been a slew of articles written by "learned doctors" (or even the 1/
spouses of physicians) that aim to minimize, deny or psychologize #LongCOVID, #MECFS and other complex chronic illnesses. The problem is that mainstream media gives these article too much weight because they were written by folks with certain credentials who work at certain 2/
institutions. The reality is that the majority of these articles have been intellectually flimsy hit-pieces written by people who have no subject matter expertise whatsoever, yet have sufficient ego to think that their superficial scanning of a cherry-picked pocket of the 3/
Read 10 tweets

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